Our roller coaster ride with neuroendocrine cancer, parenting, and life.

Month: June 2018

It seems this month’s Life Lesson is about quality of life and feeling good.

I recently started a new job with a local non-profit in the aging services industry. I am responsible for building and expanding the fundraising efforts that help cover the costs of providing day services to older adults. As a middle-aged woman with older parents who might eventually need these kind of services, I am watching and learning with keen interest during my orientation. Guess what? We cannot stop the aging process! Who knew? Therefore, when it comes to providing services for older adults, the key factor is doing so with dignity and respect — so their quality of life can remain good, and so they can feel good. And so that their caregiver can get some respite, knowing their loved one is being well cared for during the day.

Thanks, Google. A snapshot from an adult day center, in another state, not where I work, because confidentiality.

Do you know where else I have heard this lately? Earlier this month when Don and I were able to hear one of the leading NETs doctors speak. One of his main points was knowing how to treat the disease so that patients had a good quality of life and are feeling well. The cancer may be incurable but the treatment can still give patients a longer and a healthier quality of life. Dr. Liu’s key question is “how are you feeling?” which guides his approach to next steps of treatment.

This is so wise! How am I feeling today? Will eating that cheeseburger and fries make me feel good? Will putting off that dreaded phone call make me feel better or worse? What next steps should I take so that I am feeling well – both physically and mentally? In our 100 mph American life we are usually so distracted and stressed that we lose sight of making the choices that will ultimately help us feel better. Today I caught on to this month’s Life Lesson.

Our roller coaster ride with neuroendocrine cancer has also taken a nice turn. Don got a great report this month. His disease is stable – no new lesions and the existing lesions have had no notable growth in 6 months. We are grateful for knowledgeable and experienced physicians who know how to treat this disease and care for their patients with dignity and respect.

What helps you feel better and enhances your quality of life? Please comment below to tell me what comes to mind. I would love to learn from you and hear your thoughts.

Did you know a group of zebras is called a DAZZLE? Yesterday we had the chance to hear the #1 US expert on neuroendocrine cancer. Dr. Eric Liu practices in Denver, CO but was speaking in Raleigh last night so we didn’t want to miss it! Fifty or so people (about 25 zebras + guests) were crammed into a dining room at a Hampton Inn in Raleigh. You may recall that NETs patients call themselves zebras because NETs is such a unique cancer (“when you hear hoof beats you think of horses, but maybe it’s not?”)*. Did you know that there are about 80 different types of neuroendocrine cancers? Wow. Dr. Liu said there were probably 200,000 NETs patients in the US. If you consider that there are expected to be over 330,000 breast cancer diagnoses just this year, it gives perspective on how unusual NETs is.

Last night was quite a gathering. Dr. Liu spoke about his medical journey that led him along the path to become the foremost NETs expert in the U.S. In addition to being a brilliant physician and surgical oncologist, he is also a caring and funny human – we liked him immediately. Then we heard from Gil Schaenzle, who lost her daughter Anna in 2017 to one of the more aggressive forms of NETs. Gil is now walking all of the US National Parks in memory of Anna, to raise awareness of NETs cancer and raise money for the Healing NET Foundation. Finally, after dinner, Dr. Liu spoke about the latest treatments and upcoming research for NETs, as well as answered questions from the crowd. It was hugely informative and comforting to be with a group of people from around NC (and a few from TN and VA) that were also dealing with this disease. Don was the “youngest” zebra there (diagnosed only about a year ago) and the “oldest” was someone who has been living with NETs for 12 years. These people were all ages, all genders, all races … all living with this strange and mysterious cancer. Talk about dazzle!

Don’s surgery was a year ago, on June 14, 2017. You can read about it here. He still sees his local oncologist, Dr. F, for the monthly sandostatin shots and sees Dr. M, the NETs specialist at Duke, quarterly for a scan and visit. This could change from quarterly to every 6 months – TBD. We are both joyful and grateful that the year has flown by and Don is feeling good. We expect this to continue for many years.

Sources:
* A “hoofbeats” example – Don’s NETs appeared as tumors on his liver. At first glance, one might think it was liver cancer, but it was not. It was neuroendocrine tumors on his liver, which originated from his small bowel. This is just one of the 80 different types of NETs.
* http://www.breastcancer.org/symptoms/understand_bc/statistics
* To learn more, check out these Ten Facts on NET.